Celine Dion delivered an emotional speech during the opening night of her Paris residency, telling the crowd she has decided to make her battle with a rare neurological disorder "my reason for living."
The 58-year-old singer revealed in December 2022 that she had been diagnosed with Stiff Person Syndrome, or SPS, a condition that causes muscle stiffness and painful spasms. At its worst, it left her unable to walk properly or use her singing voice as she once had.
On Saturday, Dion was overcome with emotion as she made her stage comeback, after being forced to cancel the remainder of her Courage world tour in 2023 because of her health.
After performing her first song of the night, "On ne change pas" ("We don't change"), she told the audience: "I had promised myself not to cry. Here we are... I'm standing on stage in this city that I love so much, thanks to your support and your love."
"I have to admit, though, that the road was rocky. The journey was longer than expected, with unplanned stops along the way," she said. "But I hung in there. A faint ray of light in the distance, deep in the mountains. I believed in it. And here it is. The sun, the sun is here. The sun, right in front of me."
Switching to English, she continued: "I made a promise to be back on stage. So here I am, singing for you and singing for me, singing live! Thank you so very much for your support, your patience and if I may say so, I am everything I am because you loved me."
Addressing her health struggles directly, Dion said: "By living with it day in and day out, I've come to terms with it. And I've decided to make it my reason for living." She added: "But look around here, all around you, right here in this room, we don't know what the person next to us is going through. There are people going through hardships, grief and sorrow. There are people radiating energy and joy. So let's take that energy and share it. That's what music is for. Tonight, we'll sing, we'll dance and we'll celebrate."
Rehabilitation regime
Dion's intense rehabilitation programme has included new medication, physical therapy, vocal therapy and immunotherapy. To make sure she is physically able to perform, she has been building strength with 90-minute Pilates sessions three times a week, plus twice-weekly ballet and barre classes. Her home gym is equipped with weights, a treadmill and a reformer machine, and she has said her flexibility has increased since starting the new regime.
Speaking to Harper's Bazaar about the routine, Dion described it as falling and getting back up repeatedly, and said she was proud of herself for achieving something her body "wasn't born to do." "It is a progressive condition," she said. "I don't like to say 'disease.' Disease makes you go like this," she added, scrunching her nose and joking, "'Kevin, you're such a disease.'"
What is Stiff Person Syndrome?
Stiff Person Syndrome is an extremely rare disorder in which the muscles of the torso and limbs alternate between spasming and becoming rigid. It is estimated to affect around 70 people in the UK and 330 in the US, and women are affected roughly twice as often as men. The progressive disease can worsen over time, and some patients eventually need a wheelchair.
There are three recognised types: classical Stiff Person Syndrome, which mainly affects the back, stomach, thighs and neck; stiff limb syndrome, which especially affects the legs and feet; and jerking Stiff Person Syndrome, the rarest and most aggressive form, which also affects the head and eyes.
Experts do not know exactly what causes the disease but believe it may stem from an autoimmune reaction in which the body attacks nerve cells that control muscle movement. Around 40% of sufferers also have type 1 diabetes, and the condition is also linked to other autoimmune illnesses and, for reasons not yet understood, to certain cancers including breast, lung, kidney, thyroid and colon cancer, as well as lymphomas.
Laid bare in documentary
Dion laid bare the brutality of the condition in her 2024 documentary, "I Am: Celine Dion." In recent days, however, she has looked in high spirits while greeting fans in Paris ahead of her shows.
The residency will see her perform 16 shows in autumn 2026 and 10 further dates in May 2027. She announced her comeback in March, with tickets selling out instantly.
Dion was diagnosed with SPS in 2022 after experiencing a flare-up in 2020, around the same time as the start of the pandemic. For three years she isolated herself from fans, partly out of fear they would assume she was living a happy, full life while still cancelling shows. During that time she said she developed a deep appreciation for nature.
"I love trees so much, and I had this vision of myself trying to disappear through the leaves," she said. The trees were bare, since it was autumn, an image she saw as a metaphor for her own struggles. "I was trying to tell them, 'I'm sorry, I don't have any apples to give you anymore,'" she recalled, until a voice told her: "But we did not come for the apples; we came for the tree."
Return to the stage
Dion's last stage performance before the Paris residency was in Riyadh, and earlier that same year she sang at the 2024 Paris Olympics. She said she is now ready to get back to work, including the less glamorous parts of being a pop star.
"Well, girl," she said, addressing herself while speaking to a reporter, "if you don't want to sign autographs and you don't want to get yourself pretty and you don't want to be disturbed because your pasta is going to get cold, you can always stay home. But look at what you have."
